- Sarah’s List Exchange Experience
Part I—Family Dynamics & Informed Consent
I was immediately drawn to the paired kidney exchange program as a way to help my mother avoid dialysis and survive her chronic kidney disease (“CKD”). The concept of helping two patients with the act of donating one kidney greatly appealed to me. “Why not do it?” was my attitude.
When I first described the paired exchange program to my mother, she dismissed it. She had been [End Page 26] relieved to hear that I was not eligible to donate to her and simply refused to discuss it further. Being rather stubborn, I sent her copies of all the paperwork anyway and so began my steady campaign to become a kidney donor.
With my subsequent activity in living donor communities, I’ve learned that many families expect other family members to step up and donate a kidney to their kin, and medical teams don’t question it. It is the “non–directed” donors who are treated so skeptically by transplant professionals—the doctors can’t seem to understand volunteering to give an organ to a stranger, and they underestimate the fact that many relatives are coerced, bribed, or shamed into donating their kidney. The medical teams adopt too readily the “kin must be willing to help save a family member’s life” presumptions without properly considering the interfamily dynamics at play.
Particularly when the kidney patient has a bullying or abusive relationship with the potential donor, or history of drug abuse or neglect (failure to take necessary medicines or follow the renal diet), the potential donor may have many reasons to want to decline. I cannot count the number of times I’ve read on–line posts from these potential donors seeking counsel and reporting that their physicians, as well as family members, are instituting short deadlines to decide whether to save such a recipient’s life or send him to his death. That is a serious guilt trip that the mental health and social worker members of transplant teams do not always take into consideration.
In contrast, I needed no coercion—I wanted to donate my kidney. After reading all of the donor materials and independently researching the risks of nephrectomy, I believed the chance of complications was slight. I thought my consent was informed. Yet, throughout the donor evaluation, I blindly relied upon the transplant team’s assessment of my exams and lab results and eagerly heard what I wanted to hear—that I was eligible to donate.
This became clear at my four month post–op check up when I had a high creatinine report. Recalling that, post–surgery, I was kept in the hospital days longer than expected while waiting for my creatinine to come down, I finally reviewed my pre–surgery lab numbers. The nephrologist had put me at 0.9 creatinine, the lowest of all my pre–donation readings, although some of my lab reports listed above the “normal” range—as high as 1.7. I didn’t ask for these numbers or question their meaning during the evaluation, and no one ever told me that I was near the cut–off for creatinine levels. I took the transplant team at face value; is this “informed?”
In hindsight, there was probably nothing that I could have learned to dissuade me from moving forward with the donation so long as the transplant center agreed that I was eligible. I was aware that there were risks of complications, but felt that my chances of experiencing them were no higher than the chance of getting into a car crash. It was my Mom who hesitated to put my life at risk for the sake of her own health. She shared with me that she had lived a good life and, if she died or was stuck on dialysis, that was fine. She didn’t want to risk her granddaughter growing up motherless and she was concerned about whether my daughter would ever need a kidney.
My only hesitation came from thoughts of my young daughter. But because my mother’s CKD was not inheritable and I was healthy, the chances of her needing...